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  4. Longitudinal Follow-Up For Newborn Screening Conditions
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Children and Youth with Special Health Needs (CYSHN)

  • CYSHN Home
  • About CYSHN
  • Information and Resources
  • Diseases and Conditions

Programs

  • Birth Defects Monitoring and Analysis
  • Early Hearing Detection and Intervention
  • Follow Along Program
  • Longitudinal Follow-up for Newborn Screening Conditions

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  • LPH Partner Resources
  • Data
  • Public Health Lab
  • Minnesota Autism Resource Portal

Children and Youth with Special Health Needs (CYSHN)

  • CYSHN Home
  • About CYSHN
  • Information and Resources
  • Diseases and Conditions

Programs

  • Birth Defects Monitoring and Analysis
  • Early Hearing Detection and Intervention
  • Follow Along Program
  • Longitudinal Follow-up for Newborn Screening Conditions

Related Sites

  • LPH Partner Resources
  • Data
  • Public Health Lab
  • Minnesota Autism Resource Portal
Contact Info
Children and Youth with Special Health Needs
651-201-3650
1-800-728-5420 (toll-free)
health.cyshn@state.mn.us

Contact Info

Children and Youth with Special Health Needs
651-201-3650
1-800-728-5420 (toll-free)
health.cyshn@state.mn.us

Longitudinal Follow-up for Newborn Screening 

Newborn Screening Propel

The Newborn Screening (NBS) Propel survey is being sent to parents and caregivers of children diagnosed with congenital cytomegalovirus (cCMV) through newborn screening. MDH is also conducting focus groups with parents and caregivers. The information from the NBS Propel survey and focus groups will help MDH identify ways to improve the newborn screening system for all Minnesota infants and their families. If you receive a survey or are invited to participate in a focus group, please consider completing it and/or participating.

What is Longitudinal Follow-up?

Longitudinal Follow-up helps children with conditions identified through Minnesota’s Newborn Screening Program and their families. We support children as they grow and families as they navigate education, health care, family supports, and other systems.

We work with parents, health care providers, educators, local public health nurses, and others across the state to:

  • Connect children who have been diagnosed with a newborn screening condition and their families to  resources and services in their communities.
    • These resources include but are not limited to:  
      • assistance with finances, insurance, or transportation;  
      • access to food or child care;  
      • connection to home visiting, early intervention, educational supports, family support organizations, or local public health.
  • Collect and study data to:
    • Make sure children and their families are getting the information and services they need.
    • Better understand how early identification affects children’s health as they grow.
    • Identify gaps in support and make improvements.
  • Use a health equity lens to guide policy and decision-making. 

For more information:

  • Congenital Heart Disease Resources Brochure
  • Considerations for Public Health Newborn Screening Follow-up Protocols for X-ALD, MPS I, and Pompe Disease
  • Diseases and Conditions Identified in Children
  • Early Hearing Detection and Intervention Parent Letter and FAQ
  • Longitudinal Follow up Fact Sheet (PDF)
  • Newborn Screening in Minnesota
  • Questions & Answers about Data Collection
     

  • Questions & Answers about Data Collection (Amharic)
  • Questions & Answers about Data Collection (French)
  • Questions & Answers about Data Collection (Hmong)
  • Questions & Answers about Data Collection (Karen)
  • Questions & Answers about Data Collection (Oromo)
  • Questions & Answers about Data Collection (Pashto)
  • Questions & Answers about Data Collection (Russian)
  • Questions & Answers about Data Collection (Somali)
  • Questions & Answers about Data Collection (Spanish)
Tags
  • children youth
Last Updated: 11/07/2024

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